Stories

Here you can read experiences and stories from fellow coeliacs. Why not share your experiences too.

What do you mean I can’t eat bread?!

It is just over 6 years since I was diagnosed with Coeliac disease, my symptoms were not obvious and it was thanks to the keen eye of my Doctor that it was spotted. (I had been a little run down for a few months and my only real problem was that my mouth was sore and failing to heal!!)

It was all a bit daunting in the beginning, as I had no real knowledge of the disease.  Luckily for me, my mother-in-laws friend had lived with coeliac disease for a long time and I was so grateful of her advice. Although I was having a nice glass of chilled larger on the night of her visit and I was very disappointed when she explained that it could no longer be my “refreshing” tipple! (I have since found other substitutes!)

My diet is far better than it was before as I have to plan ahead, especially when thinking about lunch when I’m in work, but that is not a problem and must save me a fortune as there is no temptation for me to buy those ready packed lunches.  Of course I have my staple products, like my bread and pastas, which I get on prescription, I love my fresh white bread from Juvela and drive myself nuts when I have left it too late to put my prescription in and have to manage a few days without it!

All in all, being coeliac has enriched my life, I have met some wonderful people who I would never have known, if I had not had been Coeliac.  My knowledge and shared experiences of the disease and diet has grown tremendously.  My husband, family and friends have all been amazing and go to great efforts when catering for me that my meals are all completely gluten-free, they have in fact relished the challenge.

Being Coeliac is a learning experience and following the gluten free diet will ensure that I remain healthy!

Getting diagnosed was a nightmare…

Ever since I was 4 years old (or maybe even sooner) I have suffered from chronic migraine. I went to doctors, GPs and specialists but they could do nothing for me, as the drugs available at the time were experimental and extremely expensive. I am allergic to codeine, and I had so much paracetamol growing up that it became completely ineffective. Ibuprofen was my best over-the-counter painkiller but now my stomach simply can’t tolerate it any more.

Later in my early 20s I was diagnosed with Poly Cycstic Ovarian Syndrome. A conclusive scan was never made to confirm the diagnosis but my hirsuitism, elevated free testosterone levels and general stockiness was evidence enough. The only treatment offered was “a hysterectomy and HRT” so I learned to live with it.

Over the years I’d had excruciatingly painful bowel movements and variable consistencies (apologies if you’re eating) and was eventually diagnosed with Irritable Bowel Syndrome. I put it on the list of everything else that was wrong with me and tried to muddle along to the best of my ability.

I got a job as a Prison Officer and although it was an extremely demanding job I absolutely loved it, and planned to make it my career. Sadly, fate had other ideas and I gradually began to lose strength and endurance, which had always been my greatest powers previously. Putting it down to general fatigue, I went home after a shift at work, developed a migraine… and was off work for 9 months. We suspected ME (aka Chronic Fatigue Syndrome) and saw a specialist in London. He said “right well we’ll get you tested for Coeliac disease, just to rule it out, then I can give you a definite diagnosis of ME”. Well blow me down if the endoscopy didn’t come back positive!

A year on and despite my stringent attempt to be 100% GF (I drive waiting staff at restaurants crazy and am even a bit harsh on my hubby at home!) I am still experiencing the fatigue and migraines, but my IBS disappeared virtually overnight. I had hoped that the Coeliac would prove to be the root cause of my various ailments, and provided I’m not doing something seriously wrong this has proved not to be the case. But it does go to show that the road to diagnosis can be a long and winding one! Thanks for at least providing some decent bread for me to eat

Finally some answers to what was wrong!

After having my second daughter in 2008, thats when my symptoms started-weight loss(a lot), anemia, constant headaches, bloated tummy, gurgly tummy, smelly wind! After a few trips back and forth to my GP and many iron tablets later I saw a different GP, who said she would test my blood for coeliac. I went straight  home and googled the symptoms for coeliac and immediatly said thats me!!!  When the blood test came back postive I was so relieved. I finally had an
answer as to what was wrong with me. Nearly four years of weight loss was really worrying me-I knew something wasnt right. Next was the gut biopsy, which is so important to have and you have to eat gluten right up to when you have the biopsy, and the doctor confirmed there and then I had coeliac and was told to change my diet straight away. He told me to join Coeliac UK. Within a few weeks of changing my diet, I feel so much better, headaches gone, hardly any smelly wind, gurgly tummy gone. I’m just waiting to see my dietician and to get my biopsy results.
changing the diet wasnt as difficult as I thought. I do struggle with planning ahead,getting things in for work. I cant just grab whats in the cupboard any more but I just feel so much better.

I had symptoms from childhood…

I think I’d always had symptoms, even as a very young child.  I remember being treated for ‘poor growth’ – and had to stand in front of some sort of lamp for about an hour or so once or twice a week –  not sure what the doctor expected that to do for me – but I can remember my mum saying it was because I was so small and sickly!

Then I would pick up every illness going – so they always just treated me for whatever it was I had at the time – whooping cough (at 4weeks old) then mumps, measles, chicken pox, German measles, jaundice, rheumatic fever –  the list was endless!  My mum used to say someone only had to look at me and I’d catch something!  I had two older very healthy brothers, so it must have been hard for my mum to have finally had her little girl, only to find out she was a weak sickly thing.  I’d always had headaches, but thought that everyone must be the same, so put up with a lot of it without saying anything.  I also suffered with travel sickness, and whenever my parents took me anywhere I’d be ill either before we got there or on arrival – if I hadn’t fallen asleep!

As I grew older, I began to realise that life was a struggle – and I had to try hard to keep up with my brothers and friends. Then after I married, things came to a bit of head when we moved house and my headaches were so bad and I was so tired all the time that my family insisted I get some help.  When I saw the new doctor I’d registered with, his first words to me were “God, you look dreadful!”… What an opening statement!  He told me that he thought I may have either a brain tumour or cancer, as I looked so ill and was very gaunt.  He sent me for all sorts of tests, which kept coming back ok but he wouldn’t give up until he’d got to the bottom of my illness. By this time I weighed about 6½ stone! It took six months before I was finally diagnosed with coeliac disease, and I’ve never looked back, I love baking my own gluten free bread with the Juvela mixes and am an active member of my local coeliac group.